Nora struggling cont.

Part way into day 3 and no real improvement. Nora is still plagued by frequent stomach pains. It's been difficult to get food into her belly without causing more pain. We've been keeping her on her feeding pump, which provides a constant drip of food rather then take 2-4 ounces at once. We've also been supplementing extra pedialite though to help keep her hydrated. Nora started Nora on antibiotics because we are fairly certain one or both of her lungs are partially compromised. This is indicated by Nora is having a difficult time keeping her oxygen saturation in the 90's - even with her BiPAP on. Even with around 3 liters of oxygen running into her BiPAP, she's still hovering around 90. We also began giving her something to help reduce the nausea/vomiting episodes. Her mood has been good though, and she complies with all the chest therapy we need to do. Yesterday she even suggested that we cough her, saying: "We can do coughs now. I don't want to be sick". She is able to communicate when she begins to feel pain, or needs a back-rub. Even when she feels sick or is in too much discomfort to speak, she still uses her facial communication (eyebrows up/down = yes, Ears up/down = no).At the present time though, we have this under control and are well equipped.

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Tomorrow is the day! Nora will receive her first injection of Spinraza. We are all a little terrified of what... fb.me/3dUSg9ZeK

Written on Thursday, 11 May 2017

goodentree /ˈgo͝odənˌtrēˈ/ noun

derived from our last name: Gooden and the idea of a family tree We came up with the name after we made the decision to start a family (have a child). When Nora was born and diagnosed with the terminal disease SMA, her story quickly spread, and goodentree became established.